About this booklet 1 About this booklet This booklet is about a type of cancer called mesothelioma. It is for anyone who is having tests for mesothelioma or has been diagnosed with it. There is also information for carers, family members and friends. The booklet explains the signs and symptoms of pleural and peritoneal mesothelioma. It explains how they are diagnosed and how they may be treated. It also has information about the feelings you might experience, and how your relationships, work and finances might be affected. We hope it helps you deal with some of the questions or feelings you may have. We cannot give advice about the best treatment for you. You should talk to your doctor, who knows your medical history. How to use this booklet As this booklet includes information on pleural and peritoneal mesothelioma, not every section will apply to you. For example, the sections on tests and treatments are split depending on which type you have. You don’t have to read it from start to finish. You can use the contents list on page 3 to help you. It is fine to skip parts of the booklet. You can always come back to them when you feel ready. At the end of this booklet, there are details of other organisations that can help (see pages 129 to 133). 2 Understanding mesothelioma Quotes Throughout this booklet we have included quotes from people affected by cancer. Some are from the website healthtalk.org Others are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory For more information If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use. If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app. We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00. Mesothelioma UK provides specialist information and support to people with mesothelioma. You can contact them for free on 0800 169 2409 (Monday to Friday, 8.30am to 4.30pm), or visit mesothelioma.uk.com Contents 3 Contents Mesothelioma 5 Diagnosing mesothelioma 23 Treating mesothelioma 43 After your treatment 87 Your feelings and relationships 91 Financial help and work 99 Information for carers 117 Further information 123 Mesothelioma 5 MesOtHelIoMa What is cancer? 6 The lymphatic system 8 What is mesothelioma? 10 Risk factors and causes 16 Symptoms 20 6 Understanding mesothelioma What is cancer? Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues of our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair. Cells receive signals from the body telling them when to divide and grow and when to stop growing. When a cell is no longer needed or can’t be repaired, it gets a signal to stop working and die. Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing making more and more abnormal cells. These eventually form a lump (tumour). Not all lumps are cancerous. Doctors can tell if a lump is cancerous by removing a small sample of tissue or cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells. Normal cells Cells forming a tumour Mesothelioma 7 A lump that is not cancerous (benign) may grow but cannot spread to anywhere else in the body. It usually only causes problems if it puts pressure on nearby organs. A lump that is cancer (malignant) can grow into nearby tissue. Sometimes, cancer cells spread from where the cancer first started (the primary site) to other parts of the body. They can travel through the blood or lymphatic system (see pages 8 to 9). When the cells reach another part of the body, they may begin to grow and form another tumour. This is called a secondary cancer or a metastasis. 8 Understanding mesothelioma The lymphatic system The lymphatic system is part of the immune system. It helps to protect us from infection and disease. It also drains lymph fluid from the tissues of the body before returning it to the blood. It is made up of organs such as the bone marrow, thymus, spleen and lymph nodes. Lymph nodes (sometimes called lymph glands) are small and bean-shaped. They filter bacteria (germs) and disease from the lymph fluid. When you have an infection, lymph nodes often swell as they fight the infection. Mesothelioma can spread to the lymph nodes in the chest. Mesothelioma 9 The lymphatic system Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Diaphragm Spleen Groin (inguinal) lymph nodes 10 Understanding mesothelioma What is mesothelioma? In the UK, more than 2,700 people are diagnosed with mesothelioma each year. Mesothelioma is a cancer of the mesothelium. This is a thin lining (membrane) that covers the outer surface of many of our organs. The mesothelium has different names depending on where it is in the body. For example: • the mesothelium in the chest is called the pleura • the mesothelium the abdomen is called the peritoneum. Cancer of the mesothelium is called malignant mesothelioma. But it is usually known as mesothelioma. Mesothelioma in the chest is called pleural mesothelioma. Mesothelioma in the abdomen is called peritoneal mesothelioma. Pleural mesothelioma is much more common than peritoneal mesothelioma. Pleural mesothelioma The lungs sit within the chest, on either side of the heart. They supply oxygen to the organs and tissues of the body. The lungs are covered by a lining called the pleura (see illustration opposite), which has two layers. The inner layer covers the lungs. The outer layer lines the ribcage and a sheet of muscle called the diaphragm. The diaphragm separates the chest from the tummy (abdomen). Mesothelioma 11 The pleura produces a small amount of fluid. This fluid acts as a lubricant, which allows the lungs to move in and out smoothly and helps you to breathe easily. Mesothelioma in the pleura starts as tiny lumps (nodules) that are usually spread throughout the pleura. These eventually grow together, causing the layers of the pleura to become thicker. This means the lungs and chest cannot move as freely, causing you to feel breathless. Fluid may also collect between the two layers of the pleura. This is called a pleural effusion (see pages 72 to 73). Structure of the lungs and pleura Windpipe (trachea) Lymph nodes Pleural cavity Outer pleura Inner pleura Rib Diaphragm Inner pleura Pleural cavity Outer pleura 12 Understanding mesothelioma Peritoneal mesothelioma The organs in the tummy (abdomen) are covered by a lining (membrane) called the peritoneum. It has an inner and outer layer. The inner layer covers the organs in the abdomen. The outer layer lines the abdominal wall. The peritoneum helps protect the organs in the abdomen and keeps them in place. This is shown as the thick line surrounding the abdominal organs in the illustration opposite. When mesothelioma develops in the peritoneum, it causes the layers of the peritoneum to thicken. Fluid may also collect between the two layers. This is known as ascites (see pages 76 to 77). Mesothelioma 13 Side view of the tummy (abdomen) showing the peritoneum iver Peritoneum Spine Stomach Peritoneal space Omentum Bowel Rectum (back passage) 14 Understanding mesothelioma Cell types of mesothelioma Pleural and peritoneal mesothelioma can be grouped according to how the cells look under a microscope. There are three main types: • epithelioid – this is the most common • sarcomatoid (fibrous) • mixed (biphasic) – this has both epithelioid and sarcomatoid cells. Knowing the type of cell involved may give your doctors an idea of how well the mesothelioma will respond to treatment. Rare types of mesothelioma Very rarely, mesothelioma may develop in the outer lining of other organs. This includes the heart (pericardial mesothelioma) or the testes (testicular mesothelioma). 16 Understanding mesothelioma Risk factors and causes Asbestos Asbestos is the most common cause of mesothelioma. Over 9 out of 10 cases of mesothelioma (90%) are caused by exposure to asbestos fibres. Asbestos is a natural mineral found in many countries. There are three main types of asbestos: • blue (crocidolite) • brown (amosite) • white (chrysotile). They were used in UK industries until the ban on imports of blue and brown asbestos in the 1980s, and on all types in 1999. Exposure to blue and brown asbestos is commonly linked with mesothelioma. However, exposure to all types of asbestos is harmful. Mesothelioma does not usually develop until many years after exposure to asbestos. It can take from 15 to 60 years. But the average is about 30 to 50 years after exposure for pleural mesothelioma. It may be less time for peritoneal. Mesothelioma 17 Pleural mesothelioma When asbestos is damaged or disturbed (often by hitting, rubbing or handling), it releases tiny fibres. These fibres can be breathed into the lungs. Asbestos fibres are very fine and can get into the smallest airways of the lungs. Once the fibres are in the lungs, the body’s defence mechanisms try to break them down and remove them.